Category: support

This was written by Dr Mark Ibsen, MD, who has become a close friend of mine; as has Dr Tennant. My thoughts and blog post on this subject will be forthcoming ASAP! But for now, just for this moment, here are Dr Ibsen, MD’s words regarding this abhorrent situation with Dr Forrest Tennant:

Dr Tennant recently came to Montana to testify for Dr Christensen. Sadly, while in the home state of many of his intractable pain refugee patients,

His home was invaded and business ransacked by agents who allege he was “overprescribing”.

Just what IS overprescribing?

And what would Underprescribing look like?

This term would imply that there is a ceiling dose of a medication that has been prescribed.

It would also imply that there is a “Goldilocks Dose” that is not too high

Not too low, but “just right”.

Dr Tennant,

An endocrinologist,

Has been on the forefront of research and therapy for the intractable pain that patients developed after years of medical or interventional management, or mismanagement.

These are patients with adhesive arachnoiditis, complex regional pain syndrome, trigeminal neuralgia, failed back syndrome, traumatic brain injury, and various other accidental and iatrogenic pain syndromes.

The law enforcement and regulatory agencies Who are threatened by the Obi-Wan Kenobi of pain medicine do not have the sophistication,

compassion,

Or training to realize that they are not dealing with El Chapo. Drug dealers don’t actually care how their clients are doing. In fact, when a drug addict dies of an overdose, sales most often go up. Dealing drugs that are unregulated and often fatal is not what doctors do.

Most people who suffer cardiac arrest have some type of medication on board. We don’t arrest their doctor for prescribing a Statin or aspirin or blood pressure medication in an attempt to enhance or prolong a persons life.

People have hypoglycemic reactions every day,treated for their diabetes. We do not arrest their doctor for “overprescribing insulin”.

All doctors are required by their oath to do no harm-to try to hit that “Goldilocks dose”

When cancer patients die,

Do we blame there oncologist for killing them?

There’s a reason medical doctors train for 12 to 20 years, then continue to study and research the literature their entire careers. Could it really be true that Dr. Tennant is sidelined by a DEA agent with 12 weeks of training?

Are doctors no longer protected by the regulations outlined in the Controlled Substances Act?

Dr. Tennant treats the sickest of intractable pain patients. I too have referred intractable pain patients to him, I have taken his courses and follow his protocols.

Now, who will testify for me and protect my patients?

According to the World Health Organization North America provides the best pain care management on the planet. Dr. Tennant has always recommended following the world health organization pain ladder.

Doctors like forest Tennant, William Hurwitz MD, Ronald Myers, and Chris Christiansen are simply guilty of trying to relieve the suffering of their intractable pain patients.

This often requires us to

“Increase the dose”

If we as a culture continue to punish pain patients and the doctors that serve them no one will be safe accessing the incredible medical system we have developed in the US.

Yes, complications occur.

Yes, people are dying.

From heroin/ fentanyl injection ODs,

Not

From responsible informed and well researched treatment of those in intractable pain who have failed every other therapy available.

I was recently a guest on a radio show, “Conspiracies Against Wellness “. I was interviewed by Jonelle Elgaway and I spoke about the Opioid crisis. Please listen and answer my “call to action” plea at the end.

Please feel free to share this. I encourage you to share it so as many people as possible will learn about all that the chronic pain community is going through.

We see so much in print these days about the “addicted”, the “overdoses”, the “bad guys” that are posting incorrect information all over the internet and about the opioid crisis.Of course it seems as though only those of us living with daily chronic pain, truly understand that the “crisis” is indeed one of the pain patients “falling through the cracks”. Being-untreated or under treated and then committing suicide or having to spend the rest of their lives in agony.This is the true “Opioid Crisis”. But then I saw a short clip of a very well spoken, kind young woman named Victoria Suan.She was asking for volunteers to help with an upcoming video compilation called “Inside Incurable Lives”, that she was doing for Social media.She was going to follow a few stories of persons living with daily chronic pain and show how it affects their lives. I responded to her request and sent in some video clips; as did several other chronic pain patients. The first Social media video compilation called “Inside Incurable Lives, Episode 1”,came out in September 2017.In the second video compilation, Victoria was asking if chronic pain patients would be able to tell her “What one pain medication, would they not be able to live without?” Secondly, “If your Dr. Could no longer provide this, what would you do?”The second video compilation project, “Inside Incurable Lives Episode 2”, focused on the voices of pain patients and their views regarding access or lack of access to opioid pain medications as well as medical marijuana. Episode2finished and posted in October. I was happy to be able to participate in both of these projects. I’m trying to help with this crisis in any way that I can. Later, I will be providing the links to these 2 video compilations for Social media. But first, I want you to introduce you to Victoria Suan, and her feature Documentary “Becoming Incurable”.

Victoria lives in California and since High school, she was interested in becoming a filmmaker. She graduated from Sacramento State with a Communications degree. She started creating short documentaries during college and then afterwards she decided that she wanted to make a feature documentary. She started researching blogs and video’s on YouTube. From there she discovered the chronic illness community. Victoria found through her research, what she describes as “a wonderful support network of people who are giving one another validation as they deal with the frustrations of chronic pain.”She told me that she was thrilled by what she saw, and inspired. She decided to create a feature documentary about “chronic illness through intimate stories of real people living with chronic pain”. Starting out with her cousin who lives with Dystonia and a friend with another incurable condition, she then found her third featured person for the documentary. She describes the 8 or 9 months of filming as a “wonderful journey”.

The two video compilations on social media, that I participated in, were an extension of her feature documentary. Victoria then made a Facebook page and it became a platform for the chronic illness and pain communities. She has become a “voice” for those of us who live with pain & chronic illnesses and she is showing our side of this painful journey. She also wants to do whatever she can so people learn about her feature documentary.

Before we get to the two video compilations in which the chronic pain communitiy on Facebook participated; I’d like to share some of Victoria Suan’s views about the opioid crisis.I feel that it is very important to listen to the views of others who are neither patient, politician nor physician. Now that she has become closeto several of us from the shorter video’s; I asked what her thoughts and feelings are, regarding what is happening to the chronic pain community? Her response was very heartfelt and thoughtful. Victoria told me that regarding the opioid crisis, she “really feels for the families and individuals that are dealing with addiction. Sadly, there aren’t enough ways to treat addiction without affecting the millions of chronic pain patients in our society.”She told me that she’d read that Governor Chris Christie blames hospitals and physicians for starting this opioid epidemic. She wondered “how would a person dealing with chronic pain feel about this? How ignored and betrayed they must feel.Is it wrong to eliminate a torturous level of pain by taking medication as prescribed by Dr.s?”My own feelings are that politicians seem to not really care as long as it doesn’t touch them or their own families.Victoria agrees that they just don’t want to listen to this. She feels that as chronic pain patients, we should not have to fight so hard just to be heard, really listened to.But we are trying to fight because our very lives depend on it.

Victoria feels that it is “sad that one governors personal opinion can do more to influence legislation than the voices of millions of chronic pain patients.” She is happy that there are News outlets such as this and others, along with non profit organizations, such as the U.S. Pain Foundation; that are educating the public about chronic pain.Victoria thinks that the film industry; especially a film called “Unrest” that is touring worldwide; and her documentary, “Becoming Incurable”, show that efforts are being made to educate and inform the general public about chronic pain.

Lastly, I wondered what she has learned from doing the 2 video compilations and the documentary film. She mentioned that she hadn’t realized before doing this, how difficult it is for people living with chronic pain to “do normal tasks, such as getting out of bed and/or going to the grocery store”.I think that it taught her and hopefully will teach others about “Invisible Illnesses”.She says that actually seeing these people in their pain, made her “truly acknowledge what life is like with chronic pain and illness”.She feels that these projects taught her that each person has their own unique story to tell. She has figured out through these projects, that we are united in our pain yet each of our situations vary widely. I want to share with you in Victoria’s words, what she wants people to learn from watching “Becoming Incurable”. She hopes that people “will see these video compilations showcasing pain patients and stand with organizations that are fighting for the chronic illness community.If our government continues on this path of neglect, I’m certain that chronic pain patients will be forced to fight a human rights issue.I think this has already begun, as we are learning the numbers of chronic illness patients committing suicide.It is important that we speak and act now in order to invalidate a campaign that deems anyone taking opioid medication as a suspect of the addiction problem.

Here are the links to the 2 video compilations of “Inside Incurable Lives” by film producer, Victoria Suan:

Imagine that one moment you are walking around, sipping lemonade at a Summer arts festival and the next you are admitted into a hospital after a man ran through a red light.You awaken after a catastrophic motor vehicle accident feeling incoherent and in a lot of pain.That was what happened to me in 2002.I endured 3 years of brain injury rehabilitation, 8 years of Physical therapy, speech therapy and 8 surgeries. But this story is not about those days, it is about later getting diagnosed with RSD/CRPS.

I went in for surgery on my right foot, in April of2007.Six weeks later I had my post-op check up. I knew something was wrong, before I arrived at my appointment.I was in more pain and it felt as though my foot was “on fire” and had “exploded” on the inside.I was told by the surgeon that day, that I “had a little RSD” and I was given Lyrica.I could not take the Lyrica, as it made me very ill.After researching “RSD” online, what I read sounded horrific!I decided to get a second opinion. After visiting an Orthopedic foot/ankle specialist, I was told that I had “Classic RSD” and he sent me to a Pain Management clinic.I did not go because I’d recently been through all of the “hoops” of the pain clinic, following the car accident.I wasn’t a candidate for a pain pump or a spinal cord stimulator and so I was sent back to my primary care physician.The pain Dr. had told me that “they are looked at under a microscope by the government”, therefore I had to have my primary Dr. do the prescribing.I ended up getting medications to try and help with the pain.I tried to finish up the PT but any touching of that foot was unbearable.

I was getting by, just trying to live day to day. Then in 2013, what was supposed to be a pacemaker replacement surgery turned into a total pectoral muscle rebuild and more. I was diagnosed with “severe systemic/full-body CRPS. I am very lucky to have a Neuro-Cardiologist who’s done research on RSD/CRPS. He tried to head off the full blown systemic CRPS by taking several precautions. Unfortunately, it did not work for me.Now I’ve explained how I got the CRPS but I’ve not told you about the depth of pain people endure when living with this Neuro- Inflammatory Autoimmune illness that is #43 on the McGill Pain scale.The copyrighted flame CRPS awareness ribbon is a perfect example of what it feels like. Personally, it is as though the entire left side of my body, inside and out; is on fire.It feels like a deep burning fire within and yet I feel and icy coldness as well. My knees, feet, hands and chest feel as though they might explode at any given time. This is only one of 8 or 9 high pain chronic illnesses that I live with. I think it is the illness with the worst kind of pain.

November is the month dedicated to Awareness of RSD/CRPS, also known as “Reflex Sympathetic Dystrophy” and “Complex Regional Pain Syndrome”. Health advocates and patients join with non profits, such as RSDSA (Reflex Sympathetic Dystrophy Syndrome Association); and we spread awareness. This is a complex and somewhat rare high pain illness. It is classified as a rare disorder by NORD (National Organization of Rare Disorders) and the FDA, but about 200,000 people are diagnosed annually.According to the RSDSA website, “CRPS occurs when the nervous system and the immune system malfunction as they respond to tissue damage from trauma. The nerves misfire, sending constant pain signals to the brain.”Usually it follows a surgery, a period of immobilization after a musculoskeletal trauma or some kind of injury to the nerves.It steals the very life out of so many people who are unfortunate enough to be diagnosed with it. Early diagnosis is the key to some instances of remission. Sometimes it takes years to even get a true diagnosis, due to the fact that many physicians don’t even know anything about it.But there are some people who can help.RSDSAis a 501(c)3 non profit organization based in Connecticut and was founded in 1984.I’ve come to know and love, the Vice President/director, Jim Broatch, MSW.Annually, during the month of November, we have quite a campaign going. RSDSA is always there to “provide support, education and hope to all affected by the pain and disability of RSD/CRPS”. They are always striving to do more research and develop better treatments.

Some of the events that I have going for this month, include a campaign that I call “#wearthemsharethem for RSD/CRPS”. You see, when the former RSDHope.org closed their doors in June 2016; there were many treasures “gifted” to me by my “adopted” family, the Orsini’s. I was given a number of temporary tattoos with the copyrighted CRPS flame awareness ribbon on them. I have put those to good use 2 years in a row, now. I ask people to just send in a SASE (self-addressed stamped envelope). I return their envelope with several of the temporary tattoos inside.I only ask for them to send me a photo of themselves or someone they love, wearing one of the tattoo’s, so I can post it to my Website“RASEforCRPS” (R.A.S.E. represents: Research, Awareness, Support & Educate). I use the hashtag #wearthemsharethem and we post to Instagram, Facebook and Twitter, in order to raise awareness. Also I have gotten a proclamation from the Governor of Michigan, Rick Snyder every year since 2013. The proclamation declares that in the state of Michigan, we recognize November as the month dedicated to the Awareness and support of RSD/CRPS. Then there are 3 fundraisers that I have going on this month:a Facebook fundraiser lasting all month, a LuLaRoe Album sale on Thursday, November 16th through Friday, November 17th for 24 hours, and a Pizzeria fundraiser and Awareness event on Thursday, November 30th from 5:00pm until 8:30pm. One more activity for Awareness and education that I did last year and am doing again this year is the “#30factsfor30days of November”.I post a daily fact about RSD/CRPS on each social media site.All facts are taken from the RSDSA website, with their permission of course.

Aside from what I am doing, which also includes writing, posting, blogging and sharing; RSDSA has many events taking place during the month of November also.They have an “event Calendar” on the website, but just to name a few:there is the 4th annual Central New Jersey RSD/CRPS Walk for Hope, Saturday, November 4, 2017, the 5th annual Fight the Flame 5K, in Charlotte, NC, on Sunday, November 5th, 2017, the Fight the Flame 5k, Mentor, Ohio, Sunday, November 5, 2017, CRPS Meet-up and Scavenger hunt by CRPS Forum, Los Angeles, CA Monday, November 6, 2017, Charity Ride for CRPS, New York City, Saturday, November 11, 2017, and Color the World Orange, World Wide, Monday, November 6, 2017.

Please help us share this information and raise awareness and support for this painful illness. The RSD/CRPS community truly comes together at all times, but mostly during this special month.We are not ones to sit in the side lines. This community comes together and creates a beautiful month of togetherness, awareness, support and raising money for the much needed research.The monies raised, also helps RSDSA provide patient assistance.One of the funds that helps RSDSA assist CRPS patients is the “Maria Lane Fund” and another is the Brad Jenkins memorial Fund.You can find out about these assistance programs at the RSDSA website as well. There is also an RSDSA informational YouTube channel at https://www.youtube.com/user/RSDSAofAmerica. The other part of RSDSA’s mission, is to fund research. They have funded more than $3 million dollars in pilot studies and pain fellowships.

Lastly, I want to personally thank Jim Broatch and RSDSA for the letter that they sent out on October 9, 2017.I was touched and I stand along side of many other RSD/CRPS patients/advocates. This letter that was emailed to it’s members, states that they “Oppose Cigna’s decision to Not Cover the cost of OxyContin in 2018” and they wrote also “We will continue to stand with our community during the War on “People in Pain”. Thank you to all who are doing their part to spread awareness and try to educate the medical professionals and the public regarding this illness.

I’ve had a few interviews recently, with people who want to know about “my story” mostly. But I’m finding out more and more that so many in mainstreamed society do not understand chronic illnesses or pain whatsoever. There are 100 million people living in the USA, who live with daily chronic pain. We truly need to “talk about” this. I’ve even been speaking with legislators to try and get some of these House Bills to NOT be permanent law. The people who are sitting on these committees do not understand anything about chronic pain, yet these are the persons making the medical decisions for us instead of our physicians. Most or many chronic pain patients visit their pain management physicians, now monthly. The pain doctors are the ones who went to school for many many years to learn about how to treat people who live with real pain on a daily basis. Why are these Bills being turned into laws without the consent of a pain Dr.? Why were there no pain management physicians sitting in on the meetings when the CDC guidelines were being discussed?

The CDC guidelines that were put into place in 2016, were done behind “closed doors” and in “secret”; without any pain management physicians there to guide them at all. No, there was only PROP (physicians for responsible opioid prescribing), including their guy, Andrew Kolodny; who is a Psychiatrist. He is an addiction specialist, not a Physician trained in the treatment of chronic pain. Why would the CDC set guidelines like these and allow them to be done like this in secret, by a person who is not even trained in the management of pain? Next, these guidelines are supposed to be just that, “guidelines”. Somehow they have become the “law” without actually going through the right chain of events to become a “law”. Physicians, pharmacies and others are now adhering to these “guidelines” that were meant for general physicians, not even for Pain physicians. But some pain management Dr.’s have seen their colleagues have their livliehoods taken away by the DEA now, and they are fearful. They fear losing their practice and everything that they went to school all of those years to do.

These CDC guidelines are not the law but Dr.’s are being “bullied” into making them the law in their own practices. They have famlies and a life outside of pain management. They don’t want to lose everything and I undertand that. But someone has to stand up for what is good, lawful and right! We need to remind our physicians that these are just guidelines and not anything that legally must be done right now. The guidelines, after all, were also supposed to be about stopping the overprescribing of opioids right after an injury or a surgery. They weren’t meant to take the very lives away from the chronic pain patients; yet that is what’s happening. People are dying and suicides are rising even though in the last several years, the prescribing for opioids has actually gone down. Did you know that legacy chronic pain patients, those who were already on an opioid pain medication plan that was working for them, before the 2016 guidelines came into effect; are supposed to be exempt from them? But that’s not what is happening in many cities and states.

Today, in 2017, in our United States of America; people are being tortured. Yes, it is true. Our service men, the Vets who came back from combat, after fighting for their country, return home to live with terrible and painful wounds. They were the first to be denied pain medications and now everyone else is following. How can a country let those who lost a limb or more, fighting for them; just live with pain and not try to ease that pain? If you read the CDC guidelines in the link that I’ve provided above (in the second paragraph), you will be able to read that the guidelines spell out these words “reduce opioids UNLESS THERE IS HARM BY DOING SO”. So many in our country are now being harmed by these guidelines that are being abused and played out as “law”. Do you know that the elderly in nursing homes are now being denied opioids and left to live out their days in agony and chronic pain at various advanced ages? This is called “torture” and “abuse” and it’s just wrong! Just as it is wrong to make everyone be at the same dosage of opioid pain medication. We are not “one size fits all” human beings. Just as 90MME or less, will not work the same for everyone. We all metabolizes differently. Some physicians & legislators are listening again, to the non-pain management Dr.’s, who think that 90 MME is the highest amount that every single person should be allowed to take, no matter the circumstances. This is truly torture for patients who are in need of more than that amount. There are patients who must take more than that in order to have some semblance of a life outside of their bed. They are not groggy or high. They are just trying to get by and live their lives the best way that they possible. To the surprise of the journalists and legislators that I’ve spoken with, the chronic pain community that I know and love, doesn’t want more opioids for pain relief. They want only what is needed to get by; to live some kind of life with lessened pain. I was asked “If I could have more opioid pain medication, would I want more?” I responded vehemently, “Absolutely not!” If I did not need to take the medications that give me some pain relief, then I would not take them. I don’t want more and more pain medications. I only want the amount that is necessary for me to have some kind of life outside of my bed.

Of course, I understand that opioids normally are not the very first course of action for a chronic pain patient. We have to go through the rigorous pain clinic “steps”. There are the trigger point injections, different kinds of Nerve blocks, biofeedback and occasional trip to see their pain Psychologist. Once found to “not have an addictive personality” they will try different medications. There are persons who have tried many non-opioid pain medications and either they got deathly ill from them, were allergic or they didn’t work. The next step is usually invasive and expensive surgery to either get an intrathecal pain pump or a spinal cord stimulator. People have varying views regarding these surgeries and the outcomes. I don’t think anyone should be forced to have an invasive surgery. One in which a catheter or electrodes are stuck into the patients spine. The patient is then given a remote control device that controls the amount of stimulation they receive for pain relief (if it works). Otherwise the pain patient has pain medication filled into a “hockey puck” -like device (pump) placed inside of the abdomen area. They visit their pain Dr. monthly to get this pump filled. The intrathecal pain pump, I was told, is equal to about 1/300 of the amount of oral pain medication. It is dripped slowly into the spinal cord to help with pain. Dangerous granulomas can form and there may be other complications. I must also mention that afterwards, you are then “married” to that specific pain Dr. for the rest of eternity (for the most part). I also must add that most everyone who has these invasive surgeries, still need oral opioid pain medication for “breakthrough pain”.

There are persons who aren’t candidates for one reason or another and they are not able to get a Spinal cord Stimulator or an Intrathecal Pain Pump. After trying many non-opioid medications and not being a candidate for either of these surgeries; there are not a lot of other options. But I want the decision to be between my Pain Dr. and me, alone. I don’t want the government in my patient room, uneducated in pain management but trying to make all of the decisions. I honestly believe that me and my pain management physician, who went to school for approximately 13 years, or more, to specialize in taking care of people who live with pain; should be the ones to decide whats best for me. In my opinion, no one should ever be forced to have invasive surgeries; if there is a pill available that has little or no side effects, when taken responsibly. All medications should be taken responsibly because a person can overdose on insulin, heart medication or anti-depressants. It’s not just opioids that are harmful if too much is taken. Lastly, I was asked if I am “pro-opioids”. My answer is “No, I am pro-patients”.

Several years ago I was approached by a YouTube channel called “Invisible No More TV”. They had seen some of my advocacy videos for patients, chronic pain, RSD/CRPS and “invisible disabilities/illnesses”. They asked me if I would like to be featured on their channel in a short video describing “invisible disabilities” and being “invisible no more’. I agreed and I’ve been featured on that channel ever since 2012. I later found out that this YouTube channel is a part of a much bigger organization called the “Invisible Disabilities Association”. The reason that I’m telling you this today is because this week is “Invisible Disabilities Awareness week”. I’ve always been a team player for IDA and have always supported them and they have always supported me, since we met in 2012.

First of all, let me explain that an “invisible disability”, according to the IDA website, which you can find by visiting: Invisibledisabili.org, is “a physical, mental or neurological condition that limits a person’s movements, senses, or activities that is invisible to the onlooker. Unfortunatley the very fact that these symptoms are invisible, can lead to misunderstandings, false perceptions and judgements.” The Invisible Disabilities organization works tirelessly throughout the year to bring awareness to illnesses, diseases and disabilities that often times seem to go unnoticed. One week during the year, the third week of October is the time to share your journey with invisible disabilities. This year, that week is October 15th through the 21st, is “Invisible Disabilities awareness week”. During this wek, we will be posing many interactive posts on Facebook, Instagram and Twitter. These are where you can share your personal stories, advocacy, favorite people, places, pets and anything else like this that you wish to share. This is YOUR week to meet new friends, post a video or share stories with others. The reason for this is that we want to show you that you are “INVISIBLE NO MORE” and just because people say “but you look good”; doesn’t mean that nothing is wrong on the inside.

This is how this week will play out: On Monday we want you to “share your story”. You can post as much or as little as you wish. You can post a photo collage with a story underneath, or you can make a *short and sweet video (about 2 minutes is best). Please note that you can post your story throughout the week, but Monday is the starting date for this activity. On Tuesday we will be sharing stories of why invisible disabilities awareness is important in your life. You can make a video or a photo collage about your life and the millions of others who live with illness and pain that goes unseen sometimes. If you have the Invisible Disabilites glow-in-dark wristband, t-shirt or lapel pin; please wear it (you can buy them at the IDA website at: www.InvisibleDisabilities.org). If you have none or some of these, you can just choose a blue hat, scarf and/or a blue shirt. Invisible Disabilities Association wants to “turn the internet blue for millions living with Invisible Disabilities. IDA is on Instagram at: http://www.Instagram.com/invisibledisabilities, on Twitter at: http://www.twitter.com/InvDisabilities and on Facebook at: www.Facebook.com/InvisibleDisabilities. You can use the tag #InvisibleDisabilitiesWeek.

Just to give you a little bit of background about I.D.A.; they were founded in 1996. Their mission is to “encourage, educate and connect people and organizations touched by illness, pain and disability around the globe”. They believe that “together we can make a difference in our communities and around the world.”

But now I just want to tell you a little bit about my friend Sherri Connell was an actress, dancer and loved to dance and sing. When she was 27 years old she lost the ability to take care of herself. She was diagnosed with progressive Multiple Sclerosis and she was in a wheelchair paralyzed. At first friends and family were understanding and supportive. She has been able to regain some use of her legs with a lot of work and effort. She still finds it difficult to stand and walk around. But because suddenly the other people in her life could no longer “see” how the MS was disabling, they stopped being as understanding. It was not the wheelchair that kept her from her career, but the disabling fatigue, cognitive dysfunctions, horrible pain and dizziness too. She could not care for her own daily needs.

Sherri’s husband Wayne, decided to try and tell people; help to educate their friends and family about her disabilities and illness. He published a few writings from her daily journals onto a website. They thought long and hard and then decided on the name “Invisible Disabilities Association”. Sherri quickly found out that she was not the only one, because she received numerous emails from people all over the world. These people reiterated that they too, had felt alone and felt like nobody understood what they were going through because sometimes it was or is “invisible”. Then it became Wayne and Sherri’s passion to help others with disabling conditions by first believing them, and then by being compassionate, supportive and hopeful.

So then, in 1996, Wayne founded the Invisible Disabilities Association (a 501(c)3); with a mision to “Encourage, Educate and Connect People, Organizations Touched by Illness, Pain and Disability Around the Globe”! If you have any questions, you can reach out to Sherri Mitchell Connell or Wayne Connell on Facebook, Instagram or Twitter. You can also find them through the IDA website listed above. Let’s all have a great week of spreading the awareness of Invisible Disabilities, Invisible Pain and Illnesses that go unnoticed to others at times, but never to those of us who live with it on a daily basis.

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You will find more "about me" here: About.me/Suzydukettes. I am a survivor first! I am a Chronic Pain Patient who lives with Severe Systemic-Full Body RSD/CRPS, the highest form of chronic pain known; at #43 on McGill Pain Scale. I live with RSD/CRPS and several other high pain illnesses. I continue to be a mentor for newly DX RSD/CRPS patients. I'm a blogger and Author/regular columnist for "National Pain Report". I'm a Patient Leader for WEGO Health as well as being a freelance writer for several different venues. I've done feature commercials for IDA.
I not only blog for my own therapy of sorts, but in the hope of helping others. I blog sometimes for RSDSA, RSDHOPE and others. I'm founder of R.A.S.E.for CRPS (@RASEforCRPS on Twitter, RASEforCRPS on Instagram and RASEforCRPS.tumblr.com). Also I founded "People In Pain Unite" on Facebook/Twitter-(@ppl-InPainUnite)/Instagram. On Instagram, I also have a page named: "InvisibleDiseases".
I've been a Patient Health advocate/activist since 2007. I have an Advocacy page at: www.youtube.com/Suzydukettes . I also have a sign Language Youtube page where I post ASL Covers of Many different kinds of songs. The ASL Youtube page is found if you Google "ASLSUZYQ". Along with doing these things; I enjoy being an Ambassador for the U.S. Pain Foundation. I do awareness events and fundraisers for them. I always say that "HOPE is a verb, and in order to have it, you must do something". To keep it, you have to keep doing, trying & not giving up. Most everything you need to know about me, or to find me on Social Media, you can find at: about.me/suzydukettes ...OR suzydukettes.wordpress.com
**I am not a Medical Dr nor do I claim to be an expert regarding any of the subjects I may write about. I write from my own experiences. Also, Please don't copy or reproduce any part of this blog without my permission. Thank you!